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Wednesday, March 9, 2011

Jessica

Mom to Raelyn Susann

February 22nd, 2011

Kansas City, Missouri

On February 8, 2011 we went in for our routine anatomy ultrasound. It was the happiest day of our lives and we were so excited to find out that we were going to be expecting a BABY GIRL!!! Brett and I looked over at the ultrasound screen and watched as our precious baby girl moved about my tummy. I don't think that Brett ever stopped smiling. Our doctors appointment followed the ultrasound and we set in the exam room waiting, talking about what we were going to start buying...we were just overwhelmed with excitement.

When the doctor walked in, she had a worried expression on her face and my heart immediately dropped. She then told us that she had set us up for a 2D ultrasound with a Perinatal Specialist because our baby girls head was not measuring what it should be. I left the doctors office that day very upset. I did not want anything to be wrong with our baby. Brett and I decided not to say anything though, mainly because we didn't want anyone to be worried...we were both very hopeful that everything would turn out ok and that it would just be a matter of the measurements being off. We shared our joy and excitement with our family and friends. Her name would be Raelyn Susann. Her first name was a combination of mine and Brett’s middle names. She was given her middle name after my mom, who I lost unexpectedly 1 ½ years ago. My mother’s name was, Susan and even though Raelyn’s middle name would be pronounced “SUZ-ANNE”, I changed the spelling so that it would be closer to “Susan”.

The following day we went to our appointment with the Perinatal Specialist. My heart was about to beat out of my chest and I just wanted to know that my baby was going to be "ok". As the doctor began doing the ultrasound I could not take my eyes off of his face. Although he didn't say anything at first, I knew he was seeing things that were not right. I began asking questions like, "what is that you see?!" I wanted answers and the anticipation was just about to kill me. The first thing the doctor mentioned was that our baby had a severe cleft lip and from what he could tell via the ultrasound, did involve her palate. I laid on the exam table with tears rolling down my face. I was fully aware that a cleft lip could be fixed, but I didn’t want ANYTHING to be wrong with my baby. I tried to reassure myself, in my head, that is was ok. If a cleft lip was the only problem, we could deal with that. It would be ok. Brett stood by my side, holding my hand and wiping away my tears.

The doctor then focused in on the baby’s head. He asked if we could see “that”. As we looked at the ultrasound screen, we could see what appeared to just be a black, empty space. He then told us that her brain should have developed in that “empty” looking space and then went on to point out what little portion of her brain had developed. I could no longer hold back my emotions and began sobbing. The doctor apologized and was very sympathetic as he continued the ultrasound. He continued to call out the “abnormal“ findings so that his nurse could take notes. I asked him, “well what does all of this mean??” because I knew it wasn’t looking good at this point. He then seemed to struggle for the “right” words as he told us, “unfortunately these findings are a fatal combination and the baby will likely expire shortly after birth.” I looked at Brett, who was now also fighting back tears. Brett held my hand for the remainder of the ultrasound as we both cried, helplessly watching our precious baby on the ultrasound screen.

After the doctor completed the ultrasound I asked him what the next step was. He recommended that we have an amniocentesis to check for the possibility of chromosome abnormalities. If there were chromosome abnormalities, particularly the ones associated with downs syndrome or mental retardation, it may help to explain why our baby had not developed correctly. We proceeded with the amniocentesis and were told that the preliminary results would be back in 48 hours, but that the complete panel could take up to 3 weeks. The chromosomes that the doctor was particularly concerned with would be back in the 48 hours though. The nurse gave me my discharge instructions and handed us some informational pamphlets on infant hospice care. I truly felt as though my heart would literally burst right out of my chest. Brett and I left the doctors office that day sobbing and the drive home was a very quiet, long one.

After we got home we both curled up on the couch and sobbed. I just couldn’t believe this was happening to us, not that I would wish this on anyone. I couldn’t help but ask, “Why me?! What did I do to deserve this?!” We sat quietly for several hours and finally called our parents. It was really hard to call them, especially since just the day before we had called with such great news. They were both in utter disbelief. Not sharing with them that something could “possibly” be wrong was the worst part of all.

Brett and I sat around the house the next day, staring off into space. Neither of us really had much to say. I guess we were both still trying to soak it all it. Finally the time came though for us to talk about the situation and what we might do, especially since termination had been brought up by the doctor. We decided that we would wait to hear from the specialist the next day and go from there. Neither of us wanted to “give up” on our baby girl, but with that said we also didn’t want to bring her into this cruel world out of our own selfishness to just want her here.

It felt like centuries just waiting for those 48 hours to get here. Finally on Friday morning we received a call from the specialist. He told us that the preliminary chromosomes came back normal, which only meant that there was no reason to explain the poor development of our baby girl. He then went on to tell us that there was nothing that either of us could have done before or during the first part of my pregnancy that could have either changed or prevented this…it was simply something that “just happens”. I thought to myself, why does this have to “just happen” to ME?! I felt so many emotions: anger, aggression, sadness, numbness and heartache. Brett and I both stood at the kitchen counter, huddled together, as we listened to what the doctor had to say via speaker phone. He gave us several diagnosis, including alobar holoprosencephaley, severe bilateral cleft lip which likely did involve the palate and microcephaly. According to the doctor our baby’s head circumference was 3-4 weeks behind what it should have been and he had also noted abnormal movement/flexion of her hand during the ultrasound. What he had to say was simply overwhelming. We asked our questions from the list we had made, which was quite long. We wanted to make sure that all of our questions were answered and that we had a clear understanding of our baby‘s diagnosis, prognosis and quality of life, especially since we were so distraught at the doctors appointment that we had hardly asked anything. The doctor was very patient and answered all of our questions. The doctor again explained his concerns with our baby’s ability to sustain life and her overall poor development, and although he couldn’t guarantee many things such has her ability to actually “survive” after birth, he could most probably guarantee that she would have a very poor quality of life due to her lack of brain development. This meant she would be in a complete vegetative state.

Also he mentioned that the chances of me being able to actually carry to term were not likely, that our baby could very possibly pass away in the womb. Although the cleft lip and heart concerns could likely be fixed, her complexity of problems were far to broad. The doctor was concerned that overall her problems were just not compatible with life. As we ended the telephone conversation the doctor again asked us whether we would like to consider terminating the pregnancy. He also offered us more testing such as MRI scanning of the baby’s head, which he was fairly confident would be abnormal. The only problem with proceeding with more testing was that my pregnancy would only progress and if we were, in fact, wanting to end the pregnancy a decision needed to be made, as I was approaching the beginning of my 3rd trimester.

After lots of thoughts and tears Brett and I came to a decision. We decided that we would terminate the pregnancy. This was in no way an easy decision, as we were deciding the fate of our precious baby girl. She hadn’t done anything wrong. We wouldn’t get to see her grow up. Brett wouldn’t get to chase her first boyfriend away with a shotgun. I wouldn’t be the shoulder she’d cry on after she broke up with her first true love. The decision was gut wrenching and still makes me sick to my stomach. Although we wanted desperately just to wait and see how things went, we both decided that it would be even harder to put her on this earth, knowing the extent of her problems. Knowing that she would most probably suffer each day of her life just to stay “alive”. Knowing that she would have to be fed through a feeding tube and, most importantly, that she would have a very poor quality of life. As her parents we did not care about any special needs she may have or even any “imperfections”. She was our baby. She was given a name. She had a heartbeat. I had absolutely no doubt in my mind that she would be/already is loved more than anything.

We then called the specialist back to let him know we had come to a decision. It was then that we were faced with more obstacles. The doctor informed us that I was approaching my 24th week of pregnancy and that neither the state of MO or KS practiced 2nd trimester abortions, regardless of the circumstances, after 22 weeks. My stomach turned as he used the word “abortion”, it just made me sick. I asked him what our options were then and that is when he told us that we would have to make arrangements to go out of state. We found a clinic in Colorado, which was the closest of our “choices”, who specialized in late term abortions due to fetal disorders. I sobbed as I spoke with the nurse, who set up my appointment. She was very nice and sympathetic though. She explained what would be taking place, as the “procedure” was done over the course of 4 days. The nurse then went on to tell me that I would be treated with the utmost dignity and respect, as this was not a fetus, it was our baby. She had a heartbeat, a name and although there would be no record of a “birth” it was still a loss. We would be counseled for the grieving that we have been going through and they also offered a cremation service. Following the procedure we would be able to view her, if we wished to do so, and would also be given hand/foot prints. This made me feel so much better. Just knowing that it wasn’t just any ole abortion clinic that just threw you into a room, done what they had to do and then sent you on your way. They would not only respect Brett and Is feeling, but also our child. This meant so very much to me!

People may be able to look in on our situation and think what we are doing is “wrong”, but the fact of the matter is that you don’t truly know what you would do in any given circumstance, unless you have been faced with it yourself. We are doing what WE feel is right. We have weighed every possible circumstance and “what if” in our head. We are the one’s that have to live it, not anyone else. Our baby girl will be in a far better place, than in this cruel world. What brings me more peace than anything is knowing that she will be met at them Pearly Gates by my momma! Not having my mom here during my 1st pregnancy is something I have struggled with tremendously. Knowing that she will be raising my baby, her first grandchild, is one thing that has helped me to deal with this terrible situation. If I can not raise her, I couldn’t have asked for a better person to do it for me, than my mom!!

I don't blame you one bit..... Did you by any chance take Femara/Letrozole for infertility treatment? I did and it has been linked to HPE (with successful lawsuits prior to 2005). I was also dx'd with an HPE baby (along with Trisomy 13). I strongly considered termination, but I was 40 and this would be my 2nd stillborn and my last pregnancy. We have no other children and since I was going to get screwed out of motherhood, I opted to just ride it out. It was horrible and if it was just me, I would've done what you did. I joined a yahoo group for parents of HPE babies. OMG, how the hell can anyone think that this is "life"? The quanity of heavy drugs (phenobarbitol, a horse tranquilizer) just to alleviate pain is amazing. THEY SUFFER and I really felt the moms had a martyr or God complex..... Needless to say, when I said that I wished my baby to be stillborn (since I wasn't going to terminate - also a scary prospect after 24 weeks in Oklahoma), they kicked me out of their little clique.